Which covid antibody test to get?

COVID-19 (Coronavirus)
61

Hi @Maggi183 I am also a CML patient have been on Imatinib for over 7 years which had the usual gastrointestinal problems but never left me feeling tired, unfortunately I have fallen out of MMR hopefully due to having to stop taking the TKI during another illness but possibly because of mutation and am awaiting test results to see if I can continue on Imatinib or must change but it is heartening to hear of someone doing well and maintaining good MMR on low Dasatanib as the CML forums do seem full of tales of pleural effusions etc, You have cheered me up if I have to change TKI Thank you

2 Likes
62

I have had to pay for 2 private tests as NHS wonā€™t do them. I have asked my GP and several hospital consultants Test after my first vaccine showed no antibodies at all. Test after 2nd vaccine showed weak antibodies between 0.5 and 5. I have ET and take hydroxicarbamide.

2 Likes
63

Thanks Erica for your reply.
The reason that I chose the Lloyds Antibody testing service is that they do give the actual value recorded.
Many others just roll up into various bands.

I now intend talking to my GP to find out whether or not I am officially regarded as a CLL patient, The reason I say this is because I have only recently ( 2years ago) been classed as having CLL - when my Lymphocyte Count became greater than 5 - and I have not seen my consultant now for 3 years. I guess due to the Covid restraints.

It is unclear for me until after I speak to my GP. I did not receive the governments note in March last year telling me to isolate. Did you receive one?

1 Like
64

Hi @daveOsprey Yes, I have received the government letters too and also havenā€™t chased appointments by phone or in person during Covid times.
I have been proactive and asked my GP for my routine blood tests and a copy of the results to ensure nothing appears (anymore) amiss.
What are others experiences?

1 Like
65

Hi Ismo
I hope you get a TKI that you can tolerate. I find that many haematologists are reluctant to prescribe a small amount but I pushed to be given 20 mg Dasatanib per day and this lowered my BCR ABEL after one month. I have not been checked for 3 months. I had my blood taken last Friday and should know my results in 3 weeks.

2 Likes
66

Hi @Maggi183 please let us know your blood test results when you get them, take care.

1 Like
67

Thanks @Maggie183 I await the mutation tests then Iā€™ll know what the choices are but you are absolutely right re Haematologists insisting on the ā€œfull doseā€ I really struggled with Imatinib 400 when I was first diagnosed was sick after every doe whichonly reduced to feeling nauseous for about 2 hours afterwards then luckily I had to go home to care for my mother and the Consultant there was much more adaptable and put me on 300 Imatinib 100 3 times a day after meals and I got to MMR in just the same time as others on the usual dose but when I came back tot he UK had an awful struggle to persist with that regime but they gave in in the end and I continued happily on that for some years. I read somewhere that there is research showing with Dasatinib less is more whichis hopeful! I shall keep my finger crossed for you in three weeks.

2 Likes
68

Thanks Erica I will let you know my blood results when I have them.

1 Like
69

Hi Ismo let us know what happens with your results.

2 Likes
70

Hi jumbo4,

I also have ET and am on Hydroxycarbamide, I also had an antibody test which showed I had developed antibodies against COVID 19. I took the test about 3 months after my second vaccine.

It gave me more confidence in going out and about so worth having it done.

1 Like
71

My antibodies were 103 with a private in the arm Roche blood test.
Looking important that we get a third booster jab according to new research published yesterday. Hope we are given priority - pressure please BCUK to be treated as a special case. I had two AZ vaccs But looks as if important to get the Pfizer one next time. Etc etc etc!

2 Likes
72

This was posted on the bcuk Facebook page

1 Like
73

Thanks @Rammie18 yes, the survey looks great but quite a narrow criteria for eligibility.

2 Likes
74

Yeah I saw that tooā€¦ after being trigger happy in cutting and pasting here

2 Likes
75

Iā€™ve registered anyway, figure itā€™s up to them to decide whether or not to include me. Also just ordered a Lloyds test, will be interesting to see what the results are.

3 Likes
76

Hi @CosmicHobo I am so glad that you have found us.
I havenā€™t paid for a test as I am quite confused about what data it would give me, if any, and how to interpret it against a good protection.
Please let us know how your Lloyds test goes.
I really look forward to hearing more about you.
Look after yourself

3 Likes
77

Hi I had my BCR ABEL result yesterday. It is down to 0.005. This is a huge improvement. However Iā€™ve recently been very breathless and a bit unsteady walking. The hospital are organising a CT scan. Dasatanib can give you pleural effusions so Iā€™m waiting.

2 Likes
78

@Maggi183 good news but it must be worrying times for you, donā€™t forget the Blood Cancer UK support line are there for you, details above, as we are all are, please let us know how you get on.
Look after yourself.

1 Like
79

Thanks Erica! I have to say, it was a prompt and efficient service from Lloyds. Did the test Wednesday evening, posted Thursday, arrived at the lab on Friday, results emailed to me on Saturday. My total antibody level was greater than 2500 U/ml (just shy of 6 months post second dose), which is encouraging as at least my body will have some idea of what itā€™s facing if Iā€™m unfortunate enough to contract COVID-19.

I have Myelofibrosis so not sure whether Iā€™ll qualify for a third dose on those grounds, though I should at least get a booster through work (NHS) with the 'flu jab. I, like so many others have been feeling much more concerned since the relaxing of mask wearing, etc., so it gives me a little encouragement knowing there are some antibodies floating around and ready to do their thing.

3 Likes
80

Hi @CosmicHobo, thatā€™s a very efficient service and really great to know that you have antibodies floating around inside you ready and waiting to do their thing.
I am glad that you will get a booster or 3rd vaccine through the NHS.
In an NHS setting it must make you nervous seeing less people being careful and wearing masks.
Thanks for letting us know and please keep posting how you are.
Look after yourself.

3 Likes